Another Study Asks If Mammograms Are Helpful or Harmful

In yesterday’s New York Times, there was an article, “Vast Study Casts Doubts on Value of Mammograms.” The writer explains how the study questions whether mammograms save lives or impose unneeded tests and treatment. You can imagine how upsetting this uncertainty is, especially for a breast cancer survivor.

In all cancers, there is a long-standing debate about how worthwhile scans are versus the radiation imposed on the body from these tests and the anxiety induced from such tests versus leaving a tumor in place that wouldn’t harm or kill someone. I understand the arguments on all sides, but I always have a strong reaction when someone says mammograms aren’t worth it.

For me, if one life was saved from an annual mammogram, then it’s worth doing. Especially if that one life is mine or someone I love.

I was diagnosed with breast cancer at the age of 39. I hadn’t yet had a mammogram. Even though I come from a long line of women with breast cancer, none of my doctors suggested I get a mammogram before turning 40. And a few years earlier, a national government panel recommended mammograms be done starting at 50, instead of 40. Even more reason for my doctors to not push for a mammogram.

I often kick myself about not insisting that I get an annual mammogram starting at 35 years old, because of my family history. I found my lump in a routine self-exam, which I did without fail every month since I was in college. If I did get annual mammograms before age 40, would we have found my breast cancer earlier? Would we have found it before it spread to my lymph nodes? Would it have spared me having a mastectomy? Would I not have had to go through chemo and radiation? Of course we don’t know and will never know the answers to these questions. What ifs do little but create guilt. So I try to let that go. But I do admit it creeps into my mind sometimes.

Dr. Susan Love, one of the smartest, most well-known and accomplished surgeons and advocates on breast cancer, was interviewed about this study on KRCW’s Press Play with Madeleine Brand. Dr. Love talks about how there have long been questions about mammograms. And how this study shows that there are many different types of breast cancers and there isn’t a one size fits all approach to breast cancer screening and treatment. Which means we need research and studies to continue.

As Dr. Carol Lee of Memorial Sloan Kettering Cancer Center explains on the PBS NewsHour, this study is an update on a study reported nearly 20 years ago. Her opinion is that this study is just one in a long list of studies about mammograms that actually show a benefit of mammograms. Her opinion is that mammograms do save lives. I tend to agree with her.

I have another problem with this study, which was done with women ages 40-59. Once again, when breast cancer is researched, talked and written about, young women (women 40 and under) and women of color are barely, if at all, discussed.

As the Young Survival Coalition states, it is estimated that more than 250,000 women diagnosed with breast cancer at 40 or younger are living in the U.S. today. More than 13,000 young women will be diagnosed this year.

Mortality rates for breast cancer have been decreasing since 1989, with larger decreases in women under 50. That’s great new. But what about women under 40? The survival rates for young women are not good. Compared to older women, young women generally face more aggressive cancers and lower survival rates. The statistics on women of color aren’t good either. Although the overall lifetime risk of breast cancer is lower for Black women compared with white women, the death rates are higher.

Would annual mammograms save the lives of more young women and women of color?

When we look at the benefits and disadvantages of mammograms, let’s expand the conversation. Let’s look at all types of breast cancers, all ages of women and all ethnicities. Not until there’s a cure for breast cancer or a vaccine, the goal continues to be to save lives. And in my opinion, annual mammograms play a part in that.

To Scan or Not To Scan

Last week I went for my 6-month check up with my breast surgeon. I’m so grateful that I got connected to her. She’s both brilliant and compassionate with a great bedside manner. She gives me all the time I need to ask as many questions as I want and discuss whatever is on my mind. So I run a lot of things past her and ask her opinion on every medical question I have.

During my check up she did a breast exam and found no lumps or areas of concern. I do get a rash on my left breast, which is my breast cancer side, so that always worries me. Rashes are on the list of ‘red flags’ to talk to your doctor about. My breast surgeon said that the rash looks ok and because of the fact that it comes and goes means its nothing to worry about. Tumors don’t come and go. So she said everything looked and felt good.

HOORAY!!! Let’s take a moment to appreciate that.

Hooray

I still do my monthly breast exams, as my doctors recommend, feeling around my implants for any tumors that might pop up if any breast tissue was left during my mastectomy. But now I have to get to know my new boobs, and understand what feels normal and what I should be concerned about. So at every doctor’s appointment, I ask my breast surgeon about everything that feels unusual. Luckily, everything I’ve asked about she says is normal.

I also asked my breast surgeon about doing scans to see if my cancer has returned. There’s a lot of conflicting opinions about scans in the medical and cancer world. Some people and doctors think that scans can give people cancer from the radiation (ironic, huh!). And some people and doctors think that doing scans are good to be able to detect cancer early, which raises the survival rate. Early detection saves lives, right?

I’m really conflicted about this. Scans bring on scanxiety. What are they going to find when they do a scan? Then what do I have to do when that something is found – more surgery, more chemo? Ugh! But for me, not doing scans means the constant worry of something growing inside me that I don’t know about, which will keep growing until I feel it myself or get a symptom on the ‘red flag’ list for cancer recurrence.

What a shitty choice? Is ignorance bliss? Or is ignorance stupidity? Do the risks of radiation from scans outweigh the risk of not finding cancer early? Or is it the other way around?

I’m leaning toward doing scans. I’d like to know that I’m cancer-free every year. Mentally that helps me continue to live my life and make plans for my future. Not knowing how long I’ll be here is unsettling – to say the least. And I know that I can get a scan one day and then 3 months later cancer could return. Nothing is guaranteed. At least a clean scan lets me exhale and breath for a moment.

My breast surgeon originally said that we should do MRIs every year to watch for a recurrence. But when I talked to her about it last week, she said she usually recommends MRIs every 2-3 years. (I can’t do mammograms with breast implants, so MRIs are the way to watch for lumps. One of the few positives out of having breast cancer – no mammograms.)

We decided we’d revisit the scans discussion at my next 6 month appointment. My breast surgeon said that most health insurance companies don’t cover MRIs every year. How messed up is that! I have pretty good insurance, so I have to check on that. I’m going to pissed if she’s right.

I spent every other month in 2013 doing ultrasounds to watch for ovarian cancer. That much screening was quite overwhelming and difficult for me. So doing a scan for breast cancer every 2-3 years sounds really good right now.

So for now I’m left to decide – to scan or not to scan?

I Asked For Less Doctors, Not More

I have a stubborn bump on my eye that won’t go away. It’s been there for almost two months but I just couldn’t seem to pick up the phone to make another appointment to sit in another waiting room to see another doctor.

Finally last week I went to see my primary care doctor about it. She looked at my eye and asked how long the bump had been there. I told her two months and she said I should have come seen her sooner, because now what she thought was a stye had hardened and I might need to have surgery to remove it. I knew that I should have visited her earlier, but the stye showed up as I was having my ovaries removed and I just couldn’t deal with one more thing.

After looking at my eye, my doctor told me that I should go see an ophthalmologist, since the stye had been there for two month. She gave me a referral, a prescription for erythromycin and I left the office.

I got into my car and immediately started crying. I know it’s just a stye. It’s really no big deal, right? But when I heard the word ‘surgery’, I immediately flashed back to my mastectomy. It was like PTSD. Something as simple as having a stye removed sent shivers down my spine and made me flashback to being in the hospital going under the knife. 2014 was supposed to be a surgery-free year. WTF!

So today I went to see the ophthalmologist. She was actually a wonderful woman who was very smart and caring. I sat down and she told me that what I have is not a stye, but actually a chalazion, which is a small lump on the eye. She said they’re most often caused by stress. She asked if I was experiencing any stress. I just laughed.

You mean the stress of having breast cancer? Or the stress of having a mastectomy? Or the stress of going through chemo? Or the stress of radiation? Or the stress of having my ovaries removed? That kind of stress?

Then she told me she was an 11-year breast cancer survivor. So she understood. She went through the same thing. Then she said, “there is life after breast cancer.” I smiled. I knew I’d have a good cry about that one later, in the privacy of my own home.

She gave me a prescription for steroid drops that she thinks will help make the lump go away. She said we could do surgery to remove the chalazion, but we should try the drops first, unless I wanted to do the surgery. I said, no thank you, I’ve had enough surgeries.

Fingers crossed that the drops work and I’m done with what is hopefully just a minor annoyance.

My Breast Cancer Story

On Tuesday, March 13, 2012, after a long day at work, I went for a run. A normal activity for me on a lovely spring day. After my run, I took a shower. I come from a long line of women who’ve had breast cancer, so I religiously did my self-exams every month. In the shower, I started to do my exam. I knew my breasts pretty well, so as I was feeling around, I knew something was wrong. I came upon what felt like a frozen pea. I always asked my doctors what a tumor feels like, and they say two things: it feels like a frozen pea and you’ll just know what something doesn’t feel right.

Well, they were right.

Shit. I just knew things were about to change.

Getting The Frozen Pea Checked

The next day I called my gynecologist for an appointment. On Thursday, March 15, I went to get her opinion about this frozen pea. She sent me to get a mammogram, which led to a sonogram, which led to an MRI, which led to a biopsy. All of this happened within 5 days. They told me I’d get my results by Friday, March 22.

And so I waited. Often the hardest part.

Thursday, March 21 was my 39th birthday. Everyone wanted to celebrate, but I just couldn’t seem to muster up the energy to be happy about anything. While my friends and family were staying positive about my results, I just couldn’t shake the gut feeling that my results weren’t going to be good news.

The Results

On Friday, March 22, the day after my birthday, I was driving to work and my gynecologist called me. She said she had the results of my biopsy and asked if this was a good time to talk. Those words didn’t calm my fears. I pulled over to the side of the road. I knew I wouldn’t be able to keep driving while hearing this news. She said my biopsy came back positive and I had breast cancer. It’s the word we all are afraid of hearing and hope we never do.

I hung up the phone and burst out in tears. I yelled in my car, so afraid of what would come next.

I pulled myself together enough to drive the 4 miles home and collapsed in my bed. Couldn’t stop crying. My life was about to change and I was so scared.

The Doctors’ Appointment Begin

My gynecologist quickly made an appointment for me to see a breast surgeon. I met with her later that same day. I really lucked out with her. She’s a smart, caring, dedicated surgeon who specializes in young women with breast cancer. I couldn’t have ask for a better doctor and partner in this fight. This doctor, along with her team of a nurse practitioner and nurse navigator, spent 4 hours with me on that first day. They explained everything to me – how breast cancer happens, what our possible options are for treatment, and where we go from here. They were amazing!

Tests, Tests and More Tests

She sent me to do many tests to find out if the cancer had spread anywhere and if I had the breast cancer gene, BRCA. These tests would help determine my surgery options and my course of treatment. Would I need to do a mastectomy or a lumpectomy, chemotherapy or radiation.

She told me we had one month from that day to make all these decisions. One month from that day I would be having surgery. We couldn’t allow the tumor any more time to grow or spread.

All of my tests came back clean. As far as we knew, the cancer was isolated to my left breast. A bit of good news in a cluster of bad.

Then I got a call from the genetics counselor. She said I had BRCA 2, the lesser severe form of the breast cancer gene. I wasn’t surprised by these results, because of my family history and being an Ashkenazi Jew.

I spent the next 2 weeks getting a second opinion from another breast surgeon and meeting with a plastic surgeon. It was very strange being in a plastic surgeon’s office. I’ve always been the one in my group of friends that was adamant about never getting any plastic surgery – ever. How ironic that I would not be the one with fake boobs.

Decision Time

After consulting two doctors and doing a ton of research online, I decided to have a bilateral mastectomy. With my family history and having the BRCA gene, the chances of breast cancer showing up in my right breast was quite high. I thought being aggressive and proactive was the best action to take. Believe it or not, it wasn’t a very hard decision. I knew what I had to do.

First Surgery

On Tuesday, April 17, 2012, I had my bilateral mastectomy. During this surgery, tests would be done to find out if the cancer had spread to my lymph nodes. If they had, I would definitely need to do chemo and radiation. Because all of my tests came back clean before surgery, my breast surgeon told me there was only a 3% chance that the cancer spread to my lymph nodes.

Well…I’ve always strived to be the best at everything I do, so why do anything differently with cancer. In surgery, the tests showed that my cancer had spread to my lymph nodes. I was part of that 3%. So I would, in fact, have to do chemo and radiation.

Besides the cancer spreading to my lymph nodes (minor detail, right?), the surgery went well. Both surgeons were quite pleased. I was pretty nauseous from the anesthesia and had drains in me for a couple weeks, but sure was glad the surgery was over.

Next Steps After Surgery

A week after surgery, I met with my breast surgeon to talk through the pathology report and decide what to do next. She confirmed that I had stage 2 breast cancer, but my tumor was quite aggressive. She was sending me to an oncologist and radiologist, but was pretty sure they’d recommend 8 rounds of chemo and 7 weeks of radiation. My breast surgeon kept saying, “It’s going to be a long year.” I didn’t really get it. I thought 4 months of chemo and 2 months of radiation – that’s only 6 months. What is she talking about? (I was told there’d be no math.)

Well… now I know. I had to have another surgery for my final breast reconstruction. And I had to wait two months after each surgery to start the next treatment.

Making A Treatment Plan

It was quite surreal meeting an oncologist and radiologist at the age of 39. I was one of the few young women in both of these offices. Again, shouldn’t I be 60 years old when I’m doing this?

I was connected to a great oncologist and radiologist. My wonderful team of doctors continued to grow with more amazing women. Both doctors wanted to do the most aggressive treatment possible: 8 rounds of chemo (once every other week for 4 months), and 32 zaps of radiation (5 days a week for 6.5 weeks).

Chemo

I was terrified of chemo. I watched my dad go through chemo and he was sick as a dog. I was pretty lucky through my chemo. I was nauseous a few days of the 4 months, but nothing unbearable. Thanks goodness for those drugs. I was mostly exhausted and slept as much as possible. My brain definitely wasn’t working – confirming the theory of chemo brain.

One of the hardest parts of chemo for me was loosing my hair. They told me this before I started chemo. I didn’t believe them. But they were right. When you have to look at yourself in the mirror and see no hair on your head, no eyelashes, no eyebrows – there’s no way to deny that you’re sick. It’s a harsh reality.

They also tell you that the effects of chemo are cumulative. So, I was often worried about things getting worse as the chemo treatments piled on. The worst part was actually the mental aspect. I grew mentally tired of having to go through treatment as it seemed to be taking forever. And the anxiety of things getting worse as treatments piled on certainly didn’t help my mental state.

Every week during chemo I went to see an acupuncturist, who I’m certain helped mitigate the potential side effects of the chemo. I’m forever grateful for his care – both physical care and mental care. He was a wonderful man who cheered me on every step of this journey.

On September 18, I had my last chemo session. I was so thrilled to be done, but too tired to celebrate. Everyone else was jumping for joy that I was finished with this part, but all I could think about was what’s next? And how much longer?

2nd Surgery

After chemo finished, I had my 2nd surgery. This was my final breast reconstruction surgery. It was a much easier surgery than the first one. It only took a couple hours and I was home by the afternoon. I had to have drains for this surgery also, which was a big bummer. I hated those drains and couldn’t wait to get them out. But the surgery went well and I was one step closer to being done with this journey.

Radiation

On Thursday, November 6, I started radiation. It made me tired, but I didn’t get any of the redness or blistering or rashes that some people suffer through. Going to the hospital every week day for 7 weeks got real old, real fast.

On the first day of my treatment, they gave me a badge that said Cancer Center on it, with my name. I would swipe that badge every day I came in for treatment so they knew I was there. I just couldn’t believe I had a cancer badge with my name on it. It felt like a dream…or a nightmare.

5 days a week for 6.5 weeks I went to the Cancer Center for radiation.

Treatment Finished

On Friday, January 18, 2013, 10 months after feeling my frozen pea, I officially finished my treatment for breast cancer. 2 surgeries. 8 rounds of chemo. 32 zaps of radiation.

Life As A Survivor

Now that I’m done with active treatment, I’m trying to figure out how to live life as a breast cancer survivor. It’s harder than I thought. I’m grateful to have survived, but it sure was a lot to go through.

When you’re going through treatment, you know what you need to do. You put one foot in front of the other. You focus on making it through your first surgery. Then you focus on getting through your first chemo, then the next one, then the next one… Then you focus on getting through your second surgery. Then you focus on getting through your first radiation zap, then the next one, then the next one…

Now I’m left to sort through all these feelings about what I went through, what lies ahead for me and how long I’ll be around. Life is full of uncertainties and getting breast cancer at the age of 39 only reinforces that.

I’m trying now to finding my equilibrium. The roller coast of being a breast cancer survivor is hard. Harder than I expected.

One day at a time.